Wednesday, December 31, 2008

I was asked this regarding a recent post and I think it's a very good question.

Not everyone that reads here knows the nuances of Ds and I forget that sometimes.

Playette can sit and chew on her toes if she wants, which she's tending to do more often now that she in super-teething mode. [Why not one of the many items we've purchased for this specific purpose? Who knows. She wants the toes.]

She can also fall asleep sitting up, with her face on the floor...if you can picture that. Like, face on shins.

Here's a great explanation of why she's so flexible:

Ligamentous laxity: Children with Down syndrome also have increased flexibility in their joints. This is because the ligaments that hold the bones together have more slack than is usual. Ligamentous laxity is particularly noticeable in the hips of infants with Down syndrome. When lying on his back, the legs of an infant with Down syndrome will tend to be positioned with his hips and knees bent and his knees wide apart. Later you will notice it in your child's feet. You will notice that when standing, his feet are flat, and he does not have an arch. This increased flexibility tends to make the joints less stable, and it is, therefore, more difficult to learn to balance on them.-- Patricia C. Winders, PT

This is part of the reason why it has taken her longer to sit, crawl, stand, cruise, and walk than many of her typically developing peers. We go to PT and OT to help her learn how to do these things properly, instead of opting for the path of least resistance.

Not that I blame her. How often would any of us do things the easy way if we didn't have someone there telling us how it should be done? Ever tried lifting weights? In the beginning, you may try lifting more than you should. It's difficult. And then because you want to accomplish the goal, you make jerky movements. Yeah, the weight is up, but what damage have you done? What if you did that every time? Once you bring in a trainer or a knowledgeable partner, you learn and start to see better results.

The therapists are the trainers, while BD and I are the "knowledgeable partners."

I hope I didn't totally just make a craptacular analogy and that you kinda get what I mean.

Ever have a question? Let me know and I'll tell you from my perspective. I'm not a by-the-book expert, so please take what I say with a grain of salt and know that I have one kid with Ds and that every child is different.

When we arrived home from Mexico, there was a box. It was a gift from my father and his wife for Playette. I had mentioned being interested in the YBCR program and they went ahead and purchased it, for which I am very grateful. (I no longer can find our particular set on the web site, but I'll take a photo for reference later.)

On Sunday, I sat down with Playette to check it out. The first scene on the DVD is Dr. Titzer explaining a little about how to complete the program. According to him, Playette should watch the starter video twice a day for the first month. We watched it just once on Sunday. Then, on Monday, she saw it twice. Let's count Monday as Day 1.

Now it's Tuesday morning and SHE CAN READ!

Just kidding.

BD is off from school and Playette's daycare is closed (grumble grumble) since the two places follow pretty much the same schedule. He'll have her watch it during the day (running time: 20-ish minutes) and I'll do the same this evening.

The starter DVD has music, including a verse of "Twinkle Twinkle, Little Star" I've never heard before, along with children talking and various animals just animaling. When a new word is used, the screen displays the word in one color on a contrasting colored background and a triangle scrolls along the bottom of the word from left to right.

I'm not one that wants Playette to watch a lot of TV, but I'm still willing to give this a try. I want to get her started on this now with the hopes that school won't be as difficult for her later on down the road. I want her to have the desire to read books upon books upon books like I did when I was a child and not to be discouraged from doing so out of frustration. I don't know if it's a pipe dream or what. I know she'll face challenges. That's a given. But I just want her to have tools that will allow her to face them head-on and overcome. Perhaps this is one of those tools. I'm willing to take a chance. It will take dedication and lawd knows I'm lazy, but I need to get over that, and fast.

I'll keep you posted from time to time on our progress. Feel free to ask questions and generally hold me accountable during this part of our journey.

Monday, December 29, 2008

Stop bending my kid’s thumb back until it touches her arm. She’s not here for that.

I’m wondering…Did they teach you that in “Ortho school”? Like, the professor’s all, “If you’re lucky, one day you’ll get a patient with Ds and then you can try and do this .”(Class goes “Ooooohhhh!” and scribbles it in their notes.)

I get squicked out every time. And it has happened on 100% of the Ortho visits we’ve been on. I wanted to think that the first time was a fluke and it happened so fast that I didn’t have the chance to say anything. Then it happened again.

Sunday, December 28, 2008

I didn't really announce the departure, but gave a little hint here and there. BD thinks I'm crazy paranoid, but hey. Maybe if he'd just let me get bars on the windows already, I'd relax some.

Seriously, I grew up in a place where window bars were common so I thought they were pretty and gave the houses character. It wasn't until much later that I realized they were for safety. Because I lived in what some called "bad neighborhoods". Oh. Whatever. I still like them.

Anyway. So off we went on Monday to Mexico. Ahhhh. Just typing it out feels good. I can hardly believe it wasn't all just a dream because here I am doing what I always do in the place I always do it. Did we really take a break?

According to the photos, we did. Wanna see some?

I woke up at around 6 am on Christmas morning, determined to snag a great spot for the day. The best ones get reserved fast. As a matter of fact, many folks just get up, stake their claim, and go back to bed. No fair, I say, but check out what they missed by doing so.

Our cabana for the day.I had some time to kill before the fam woke up and came down to join me, so I created a Christmas tree for my own enjoyment.

More to show and tell later. For now, there are groceries that need to be purchased and tomorrow? Eh, tomorrow. I guess I have to go back to work and make the donuts.

Oh well. I guess it wouldn't be "vacation" if you did it everyday, right?

Many thanks to Cristina for helping me out while I was gone. I love those perspective posts. If you have an idea for one, please do share. It would be great to keep it going. People learn a lot from those, I think.

Thursday, December 25, 2008

Wednesday, December 24, 2008

We moved here last November, arriving the Sunday after Thanksgiving. The holiday season was in full swing.

Part of learning the area is finding a radio station or two that you like. We only had one car at the time so I was in it a lot...dropping BD off at work, taking Playette to Parent's Place, grocery shopping, picking BD back up, blah blah blah. I needed some good music to keep me going so this was a big deal to me at the time.

I was in the process of testing this one station out when I heard a song I had never heard before. It was catchy and cute and festive. It instantly became a favorite. I wouldn't get out of the car if this song was on. I sang along every time. I sang it when it wasn't on the radio. I told other people about it.

In case you're like I was and the song is new to you, I'll share it with you here, but first...another tale.

I looked up the song on YouTube, hoping to learn a little more about it. Was it old or new? Did other people like it as much as I did?

I found a homemade video with a little boy singing along and watched it several times. He made it even better!

When I read the info, I found that he had passed away earlier that year. I'd like to take a moment to thank Jason's family for sharing him with all of us. Every time I hear the song, I think of his adorable face, knowing that he enjoyed the song as much as I do.

Tuesday, December 23, 2008

I'm in the drug store. I had heard about this miracle moisturizer. A little pricey, but everything worth having is, right? [/sarcasm]

As fate would have it, I had a coupon. My plan was to max it out. I should be able to get a YOOGE stash for $16.99, I thought.

I saw it on the shelf. It was $16.99 exactly. It wasn't that big. Hm.

I unscrewed the top. I expected to see gold flecks inside.

Nope. It was sealed.

I bought it anyway.

I even had to pay $2 in tax for it. Not part of the plan.

I get home and feel like a kid on Christmas morning. I couldn't wait to rip off the seal and see the magic inside.

Wait.

It looks like...like...Vaseline?

Seriously?!

The Vaseline I have is akin to a family heirloom. I don't remember buying it, but in my mind, my grandmother did so back in 1946 for some unknown reason and then it was passed through the generations until it landed in my medicine cabinet. It's still 75% full because I really don't know what to do with it other than smear it on my lips when they're chapped and on my eyebrows when they're unruly. I think I used it back in high school when I couldn't be bothered to shine my shoes for ROTC inspections. But other than that? Eh.

If you've got some secret remedies or success stories for either product, please do tell!

Monday, December 22, 2008

When Chrystal asked for guest bloggers, I started my blog right away. Her blogs entertain me daily, so why not give her a day off. Unfortunately this has been sitting as a "draft" in my e-mail for quite sometime now. But as they say.....better late then never.....

A quick history of me and Chrystal.....Chrystal and I met in college, we were both there keeping a family tradition alive. We ended up in the DC area after graduation. Because of this, we've seen each other through a lot over those 9 years (jobs, marriages, and babies).

I like to think I've known Malea pretty much from conception. I recall getting the news out of Chrystal earlier then she had planned on telling people. This wasn't on purpose, we were having lunch and I just couldn't stop blabbing about children and being a new mini-van mom (something I swore I'd never be) and how she'd be one someday too (I'm still waiting for her to join this exclusive club). She had this look on her face.....and that's when I was told....Baby Smith was on the way.

I was so excited, not just because she was joining me on the great adventure of parenthood, but because my daughter would have a new playmate, and of course I was excited about a baby shower!!

College friends at my baby shower: Cristina, "Alicia", Me, Kristi, and "Heidi." Cristina hosted and coordinated the arrival of these surprise guests.

Fast fwd 9 months and she called me from her hospital bed, I thought it was because she had her baby....nope she just called me because she needed to kill some time waiting for nurses (thinking about it now, maybe she had some really good drugs in her IV as well). Anyways, she cut the conversation short because it was time to push. WOW I thought - she was in labor and yet had time to call? She was super mom already.

When she called me with the news of Malea's dx, I truly didn't know what to say. I was at work and I'm sure I said everything I wasn't supposed to. But I could tell in her voice how hard the past few days had been and as a friend I felt so helpless. I asked what I could do for her and she asked for food...so at least I know was good for something. ;)

Malea has made me more aware of Down syndrome and special needs children in general. I have seen the struggles and frustrations that Chrystal has faced. However, I also know through reading Chrystal's blogs, that in many ways Malea is no different than my girls and the challenges Chrystal faces I can relate to as well. Though Malea may reach milestones at different pace than my girls, the accomplishment is still the same. I like to think that if and when Chrystal moves back to DC, our children will be friends and we can set up play dates and do mom things together.

Check out Cristina's princesses. Couldn't you just eat them up?!

I was watching the world news a while ago and there was story about girl in Texas who was crowned homecoming queen and had hoped to study drama in college. She had Down syndrome and I couldn't help but think that will be Malea one day. Though I know Malea will face numerous challenges in her life, I also know there endless possibilities for her as well.

Sunday, December 21, 2008

Playette has had some behavior changes lately. She's up in the middle of the night. She'll stay up late. She'll sleep in. She'll all over the map, really.

As a matter of fact, today, she was ready for a nap almost from the time she woke up. For a little while, I thought she might be sick, but then she seemed to snap out of her lethargic state not long thereafter.

I've heard that little ones do this when it's milestone time. Anyone have any stories that support/refute that claim?

Saturday, December 20, 2008

I am not a huge holiday fanatic. In fact, most times, I just simply tolerate the season and wait for the food. You wanna know why? I think it has a lot to do with my expectations of people (you know, they) being a tad too high. In my mind, I want people to really care about each other. You know, all year long, not just fake it for the last 6 weeks of the year, spend money they really don't have, and display a sense of self-entitlement. Sure, there are cookie parties and group lunches at work, but I left there in tears yesterday. So much for warm and loving.

To be fair, a good thing did happen in the midst of it all. One of my co-workers showed me a side of himself that I didn't know was there. Maybe that's his version of holiday cheer...or maybe he's just a much better guy than I ever game him credit for being. Maybe I need to open my heart a little more and be more patient.

No maybe about that. I do.

So here's the the story:

It's Friday, the bosses are gone, the computers are being shut down in 30 minutes for a repair. A massive amount of mailings need to go out before the holidays and there are three people working on labeling and stuffing envelopes. It's not long before the "r" word starts flying. Apparently, the labels aren't being put on perfectly, thus making the worker responsible "look like a r*tard." Then another envelope looks "all r*tarded." There are only five of us in the office. The only other two people there are me and the lady at the front desk, who just happens to be the same person that watched Playette last Sunday. She can't hear what's going on, but she is the only person there with whom I've discussed Playette's diagnosis.

My first reaction was to try the "it only bothers you because you allow it to" approach. After all, that's what they always say, right? So I tell myself that I am the only one who can control my reactions and wait....

A few minutes later, I am still bothered. Christmas music plays in the background and the banter continues. I try to wrap up what I'm doing before the computers become useless.

I'm still bothered.

Ok, so screw that approach. I decide to say something.

I'm all, "Sorry to interrupt with something serious, but I'm wondering about something."

They stop for a moment so I continue.

"Was the "r" word used as slang a lot when you were growing up?"

Note: The young women I'm addressing are a six and nine years younger than me so regardless of the fact that one treats the other with disdain and rudeness, they have bonded and most times I am looked at as "the crazy old lady who sits over there."

Worker 1: "What's the "r" word?"

"R*tard or r*tarded. I choose to call it the "r" word because it really hurts me when people use it the way you were using it just now."

Worker 2: "I didn't say anything. What are you talking about?" (If you need a voice for her in your head, think Paris Hilton.)

Me: "You both said it, but, aside from that, I just wanted to let you know that not many things offend me, but that does. It's better if I tell people so that they know and I'm not bothered by something that could have possibly been avoided, y'know?"

Worker 2: "Well I don't remember saying it. What's the big deal anyway? You're probably going to hear it from me again. Just so you know."

Me: "Well, I guess unless you've been affected personally, it probably doesn't feel like a big deal, but it does to me, so I'm just letting you know."

Them: New conversation. Backs have turned.

Worker 3 has been standing there listening. You see, Worker 3 and I had this conversation about a week ago. He used the word and since it was in the midst of a conversation (we all work in open space), I sent him an email asking him to remind me to talk to him about something later. He did and I told him something very similar to what I said to the young ladies yesterday. He apologized, thanked me for bringing it to his attention, and promised to do better.

Back to yesterday.

Worker 3 sees that I have gotten nowhere with the others and have turned around to focus back on what I was doing. I'm shaking though. Me and my high expectations of the decency of others. We're shaking as we type.

Worker 3 says, "I don't think you guys get what she's telling you. She's saying that when you use that word it hurts her. That's really offensive to a lot of people. You didn't acknowledge what she was saying."

I walk over to the group and say, "I know this doesn't mean anything to you, but it does to me. I can't get out what I want to say, but if you give a damn, you can read this," and I put the printed post on the table. (not my finest moment, I know)

Worker 3 picks it up and starts to read.

I grab my timesheet and go drop it off in my supervisor's chair. My hands are still shaking and I can feel the stupid tears comings. I hate the tears. I feel weak. Like, in the way that means I should be stronger. I should handle this all so much better. I work with these people every day. I can't avoid them. I wished I had never opened my mouth.

As I turn around to leave the supervisor's office, Worker 3 comes in and closes the door.

He tells me, "You keep this. This isn't for them. What you said was enough. Or at least it should have been. I'll talk to them again but you...you keep this."

And then I let the tears fall.

He goes on, "I know this might not be the best timing, but I hope you have a happy holiday."

I swear I wanted to hug him. I never have before and I may never want to again, but I'm writing it here so that I can refer back on a day when we're pushing each other's buttons so that I can see what a decent man he really is. 'Cause that right there? Was pretty stinkin' decent.

I nodded and wished him the same, truly hoping that he enjoyed his next two weeks off.

I just now realized that he won't be there to help me through the next time I see Workers 1 and 2. Ugh. I just wish I had someone, anyone, that would be there with me to make sure that I don't crumble.

Anyway, I left. I said goodbye to the lady at the front. She asked me if I was ok and I nodded. The tears were back so I quickly closed the door.

I need help because after all of that? I actually expected one of them to call. Or send me an email. Not necessarily an apology, but just to see how I was. Because that's what I like to think that I would do.

Thursday, December 18, 2008

So I've been slacking. You know that and I know that. I've just been so busy.

I'd like to take a moment to bring you up to speed on a few things I've talked about here:

Your Baby Can Read - I TiVo'd the show, but I haven't had the opportunity to sit down and watch it yet. Hopefully I'll be able to in the next day or two. I really appreciate the feedback Michelle provided on her experience with the program. That lets me know up-front that if we invest in YBCR, we need to make sure to take the time to follow the program to the letter. Geesh. Sometimes that's the hardest part! (Exhibit 1: Exercise DVDs)

The Dilemma - We got to go to the shindig! Yup, my very sweet co-worker came through in the clutch. She's met and spent time with Playette before and they really enjoyed one another. It was a really good match. I hated to have to ask, and really was prepared to just stay home, but she was glad to do it so WOOHOO! It was only two hours and, sure, the students/spouses may have been the youngest people in the room by about 67 years, but it was still cool to get dressed up since we don't get to do that very often.

Cookie Party - I ate until I was sick. Like, I literally came home with a booming headache that I attribute to the embarrassing glutinous show I put on at work. Even though I got some really good ideas from you all regarding how to show up the rest of the office with my mad cookie baking skillz, I folded. For one, I am what some call cheap frugal. I had purchased some cookie mix not too long ago when I had a coupon and it was on sale at the commissary. Since I had water and eggs on-hand, here was my opportunity to actually use what I purchased instead of having it packed up in two years when we move again and then getting "that look" from BD when it was unpacked on the other side because we just made way too much effort to move expired cookie mix.

So, yeah, that's what I did. I made bagged oatmeal and oatmeal chocolate chip cookies. Blah. I just learned last night that the reason they didn't even come out that great, despite the fact that I put no additional effort into them whatsoever, is because I didn't let them cool long enough, thus creating some weird looking aeration thing where it looked like the cookie was a shell of its former self.

One day soon, I'm gonna make a carrot cake so that I can redeem myself. I make a really good carrot cake. Or maybe I should say, "I have a really good carrot cake recipe and when I make it, I tend to actually follow the directions most of the time."

Work - Work is work. It's been very interesting lately. Suffice it to say that I'm glad to be taking a few days off very soon. More about that later.

Tuesday, December 16, 2008

I subscribe to her E-Newsletter and there was a tidbit in the most recent edition that jumped out at me and then I realized that I should post about it.

Kathie believes it's time for new perspectives about disability, and she created the Bowl of Apples logo to illustrate that just as a green apple is more like red apples than different, individuals with disabilities are more like people without disabilities than different.

Just as one of the five apples in the logo is green, one in five Americans has a disability. I just learned something new.

A person with a disability is more like people without disabilities than different.

Apples are natural . . . and having a disability is a 'natural part of the human experience' (as expressed in the U.S. Developmental Disabilities Act).

The sun shines equally on all the apples in the bowl, and it's time for the light of inclusion, opportunity, freedom, and dignity to shine equally on all people—including people with disabilities.

I like that perspective.

With that said, here is what was in the newsletter. [By the way, in case you didn't know, I grew up in PG County, Maryland, a suburb of Washington, DC, and that's why this jumped out at me.]

Earlier this month, Prince George's County Public Schools enacted a People First Language policy. The county's Board of Education voted to adopt the resolution put forward by Board member Donna Hathaway Beck that requires school district personnel to use People First Language (PFL) in all written and spoken communication. Thanks to Donna and all the members of the Board of Education for their leadership in recognizing the respect and dignity due to all people, regardless of ability or disability.

What a great effort. It's a small thing, really, that can make a huge impact. Go, PG!

If you'd like more info like this, feel free to check out the web site and sign up for the E-Newsletter.

I'm going to look into seeing if we can get Easter Seals and/or the local military community to sponsor a speaking engagement with Kathie for our parent support group and other interested folks. It's worth a try!

Italicized portions taken with permission from The Disability is Natural E-Newsletter, December 2008 and the web site. Copyright Kathie Snow, www.disabilityisnatural.com, BraveHeart Press

Monday, December 15, 2008

One of the first pieces of info I remember reading after Playette was born was that teeth in babies who are diagnosed with Ds are "delayed" amongst other things. It's true in a lot of cases, sure, but not all. Some babies get them well within the average time frames. Regardless, I remember bawling after reading that. My baby was gonna be toothless?! Of course she would be the exception, right?! It sounded so horrible at the time. Everything sounded bad to me back then.

Ok, fast forward about a year and a half later and my baby is still toothless. It's so not horrible. She looks cute all-gums. But. But. But. It would be nice to see something white poking through after over a year of teething.

Yes, seriously.

Over. A. Year.

I don't even want to know how much we've spent on bibs.

I know that people probably don't know this unless they're in a similar situation so I'll share: I recently read that babies usually get their first tooth between 3 and 18 months(!). So we still have time. As a matter of fact, Playette's PT swears she didn't get her own first tooth until 18 months. So it happens. It's not just my baby.

As a matter of fact, 18 months is nothing after you check this out: The teeth of a child with Down syndrome usually come in later than the teeth of most children. The first tooth usually appears between 12 and 48(!!!) months.

Excessive exclamation points added by me. Right before I fell out of my chair.

And here's some more info for the uninitiated: The eruption of both baby and permanent teeth is delayed in 75% of the cases [individuals diagnosed with Ds]. Children may be 4-5 years of age before baby teeth are fully erupted. The teeth may also come in an irregular sequence – baby molars may precede incisors.

I'm honestly starting to have a hard time imagining Playette with teeth at all. She eats fine. She smiles. She reminds me of my great-grandmother the way she gums her food. Sure, Mommy Emma had dentures, but she hardly ever wore them. We can always get Playette some flippers.

I'm so kidding.

I also read that a mother's dental hygiene while she was pregnant can have an effect on the baby's teeth once they're born. Good grief. So now this could be my fault?

Friday, December 12, 2008

Have you ever just sat there at the end of the movie and watched the credits roll? I'm guessing that you have at least once.

For me, there are always roles that stick out like Key Grip and Best Boy and then I wonder what that truly entails. I mean, I know that I could Google it, but that's not the point. I figure that those unheralded positions are essential or else why would they be listed for every movie? But they're obviously behind the scenes. Not the director, or the producer, or the headlining star. They have a part to play and they do it. They make enough of a difference that their absence would be felt, but there are no awards that I know of for even those that do the very best at their given tasks.

That's how I feel sometimes. Like the Key Grip, or at least what I perceive what being one is like.

I make the phone calls, I write the blog, I do the research, I make the food for the potluck, I invite people over, I meet people in other cities, I write the emails, I drive to the far appointments, I maintain the schedule, I worry enough for the both of us. The emotional stuff.

But I can't relax or feel that is enough.

I envy that in my husband. He does a fantastic job with Playette and she absolutely adores him. He wakes her up most mornings, changes her diaper, takes her downstairs and patiently sits with her while she drinks her milk, making sure that she doesn't drink too much at one time or throw it on the floor when she's done. He'll give her the nebulizer treatment and then dress her most days and even make an attempt to do her hair every once in a while. On Mondays, every other Wednesday, and Fridays, he takes her to daycare. He picks her up on Tuesday for Speech Therapy and Thursday for Physical Therapy. He takes her to see the Pediatrician more often. He makes dinner more often. He gives baths more often.

He is the headliner.

I wish I felt better about that. Because someone has to do it, right? And since he's a student and also in the military, now is a good time for that, right? Because he'll be deployed at some point and that will all be me, right?

I know we each do our part, but...

Yesterday, I was asked by one of Playette's team if I had any questions at that time (I was alone) because, as it was put, "I hardly ever see you."

Ugh.

There's a reason for that. I know there is. I work outside of the home. That wasn't my goal when I met BD, and I didn't change my mind when I was pregnant. We were prepared for me to stay home. We had saved money and learned how to live off of one income. But then everything changed when she was born.

I no longer felt like I was enough for her. She needed more than I felt I could give. I was not the SuperMom that existed in my mind. If she did not excel, it would be on me. I had no other children and there was even guilt from that reality. Who would she interact with? Who would set the example that only another child could? Who would motivate her? Surely not me. Who was I? I was not special. I did not believe I was chosen because of all of my positive attributes like so many people liked to tell me I was. I knew myself to be lazy, choosing a nap over cleaning. The person with journals all over the house with a handful of entries in each because I couldn't be so bothered to keep up with them. Surely her placement with me was a mistake and my daughter needed more than I could provide.

So she went to daycare and I found a job shortly thereafter.

That was harder than I thought. I still felt that decision was best for us, but how do you balance it all? Therapies, IFSPs, Parents as Teachers Program, Support Group, Babycenter, Blogosphere, TriCare referrals, DSAsv, DSANV, MFT...and being a "normal" family in the midst of it all? Wanting to be looked at as just another family, like anyone else, while still asking for grace because of the extra commitments?

I cut out some things, sure. But it's still a constant effort. I can't read everything and be everywhere all at one. I want to be invited to gatherings and not be the one that people don't want around because I make them uncomfortable by simply "being."

So here's the deal. You know how BD is a student right? Well, the President of the Uiversity is having this soireé on Sunday afternoon and only 10 students are invited. He was chosen. In a perfect world, I would attend as his guest.

I made my hair appointment, made a mental note to buy some stockings, prayed I could still fit the dress I wanted to wear.

But....Ms. J is busy. As it is, she's already coming over tomorrow and Saturday nights. It would be a lot to ask even if she were available. And she isn't. So now what?

We asked friends and co-workers. Everyone has plans. Which is totally understandable 'cause it really is last-minute.

It's times like this that I'm reminded of what I said pre-child: Parents can't do everything they want to do. Sometimes you have to say no. Invitations can be declined.

I'm repeating this to myself over and over like a mantra.

It kinda sucks a little, but seriously? Our obligation to take care of Playette takes priority over all other things. Even really cool networking opportunity-type things that seem like could be possible if only the stars would perfectly align for two or three hours.

Well, this time we just have to suck it up and make a decision. Either BD goes alone or we pass. Or we find a suitable sitter, if that's even possible at this juncture.

This reminds me of something. I know there are folks out there that have been made to feel guilty for wanting to have an adult-only gathering (you should see the wedding forums I've visited in the past - WOOHOO is that ever a heated discussion!). I want you to know that even though I'm a parent now, I'm still with you. The only events Playette will attend are ones to which she is explicitely invited. Taking her with us is not an option here.

By the way, I got mad at BD earlier when he sent me a text message saying that he saw an ad for a babysitter on the bulletin board. I totally thought he was offering to leave my baby with a stranger so that we could attend a cocktail party. As if.

Apparently he was kidding. I didn't know that for a long time so I was mad...well, for a long time.

Wednesday, December 10, 2008

Thanks to all of you for holding it down. Your comments made me feel a lot better. It takes a village to raise a mom, y’know?

It’s one thing to do what I perceive to be my part, but to know that my efforts are not futile? Whew! Does it ever take some of the weight off of my shoulders to know that you all are out there, sharing what you know with others and making this world a more tolerant place for my little girl and others that share a little something extra.

I love getting messages about how folks have learned something here that they didn’t know before or how they’re changing the words that they use now that they know how hurtful it can be to someone else. And then there’s the story I heard yesterday from a pregnant friend who said that the Geneticist she spoke with could tell that she was close to someone who had a disability based on her consistent use of People First language.

Wow.

Here’s a bit of good news: Yesterday, Playette and I made the road trip to the (not so) local Children’s Hospital so that she could have her neck click evaluated by an Orthopaedic Surgeon. He could see the laxity in her joints, but said that it was nothing to be worried about. I kinda almost believe him. At least he believed me even though he didn’t hear the clicking for himself. When I asked what was causing the noise, he told me that he wasn’t 100% sure and then used the word “articulation” and said it was akin to cracking one’s knuckles. We’ll go back in a year, get some more xrays done, and see how things look. Until then, we can apparently allow her to “develop normally” and not try and restrict her from any behaviors.

More good news: They opened a famous cupcake store near the hospital. Expensive, yes, but I had to try.

Less great news: Playette took the milk I ordered from the cupcake place and promptly dumped it all in her lap. She got to ride home wearing only a diaper and cried the whole way. The long ride took even longer since I got lost somehow. Good times.

Right now, Playette and BD are at her Aqua Therapy evaluation. I’m excited about that. I can’t wait to hear what they propose.

We'll have our annual Parent Support Group potluck this evening, which marks our first anniversary of being a part of the group. I hope to see some of you there!

Before leaving, I want to thank the family member that I spoke with yesterday that is due with a baby girl soon. She went through the possibility of a prenatal diagnosis and, as a result, now has a much better understanding of Ds and the power of “they.” I appreciate her compassion and her strength to stand up for what she believes. Thank you again and congratulations!

Monday, December 8, 2008

Uh, I guess we have a thing for grey and green? That is too funny. At least Playette can keep folks guessing what she's going to wear next year.

What a weekend. BD went to a Bachelor Party on Friday night and I stayed in. Playette and I had a pretty quiet evening and I ended up falling asleep on the couch. That was all part of the plan. It felt like such a luxury to do so. The last time I fell asleep in the living room, I realized how much better my back felt afterward and I couldn't wait to do it again. I slept so good that I didn't even hear BD stumble in come home.

I was up nice and early on Saturday for the Yard Sale. It was a pretty day and I was glad to make it home with less stuff and a few dollars in my pocket to boot. I shared my space with someone who had LOADS of stuff. She made out like a bandit.

That night, I went to a Ladies Night In of sorts and it was nice to meet some new people for the most part. There were tons of snacks and I felt like everyone else got the memo to eat dinner before they came but me. Shoot, I took "heavy hors d'oerves" to mean just that. Dang, I need some self-control.

Anyway, I was pretty bummed before leaving the house. I just couldn't seem to shake it. BD asked me what was wrong and I told him that I knew that I'd be in a room full of women and I knew we may have some fundamental things in common, but that I didn't feel like I'd really be able to fit in. I knew I'd be different.

I've mentioned this before here and it's really hard to put into words how it feels, but ever since I heard the Ds termination statistic, I've wondered. Every time I'm in a group of women, I wonder how many of them made sure their life didn't end up like mine. 90% is a huge number. Chances are, unless I'm at a gathering targeted to families of children with Ds or any other differing ability, I'm going to be in the minority. I thought I knew what it was like to be a minority before, but nothing has ever been like this. Even when I was the only Black female in my college...for years. It was nothing like this.

So, BD tries to encourage me and I try to shake off the feeling and I leave. And then what happens? As soon as I get there, the conversation turns to children and childbirth (my friend I rode over with is due to have a baby very soon). Before I can even put a glass to my lips, I hear, "I had to stop before I ended up with a baby with Down syndrome."

My heart stopped. I felt like I had been stabbed. I can't explain it. Either you know that feeling or you don't. It's the one that lets you know that you're different. You're not like the other moms. Your life, no matter how good things are going, is not carefree. You live the life that they don't want.

I hate when I leave a situation like that wishing I had said something. It always happens. And then I beat myself up for not speaking up. So I did. I said something. Not profound, but something. In a small voice I said, "It's not that bad."

Writing it out, it brings tears to my eyes. It's not bad. It's good. But that's not what I said. And again, if you don't get it, you don't get it. I'm not unhappy, but I can never truly convince them of that so how do I even try? When I do feel sad, it's primarily because of them, not Playette. If they didn't exist, I might know what it was like to be carefree too.

Back to "It's not that bad." Which, by the way, is not on my list of Snappiest Comebacks Ever.

When I said it, the lady looked up. She looked at me. Then turned away. She mumbled something, but I knew she didn't think that I meant that I knew firsthand of what I spoke. If she had, in her loud and boisterous way, she would have shifted the conversation. But I knew that when the room didn't get quiet, when the only sound was not of the jazz station playing on the TV in the background, but instead was that of 8-10 voices all vying to be heard, I knew the moment had passed.

The only person there who knew my story was the person I came with. She missed the entire exchange since she had stepped out of the room for a moment. I wanted to leave at that point, but I knew that wasn't what I needed to do. Not this time.

So we stayed. We all talked. And boisterous lady and I actually do have something in common. We've lived in the very same house. We talked about how the heat still doesn't work downstairs and how the tub still creaks. I left not thinking that she was someone I needed to avoid in the future, but I wonder if she wondered after that. I wonder if she thinks about that brief exchange of words like I have over the last couple of days.

After all that deep thought, I went and had pumpkin french toast on Sunday morning. You know I love me some pumpkin. That made me feel better.

And then we went and took photos. Sooo much fun. I'm about 60 pounds too heavy and 6 inches too short to ever reach my supermodel dreams, but yesterday you couldn't tell me nothing. I was working it like I had just won 50 extra frames on America's Next Top Model.

This photo is classic "us."

Y'know, I don't know if they will ever really get it.

On the days when it feels like it matters so much more than it should, I guess I just have to remember that we do.

Saturday, December 6, 2008

We have these community sales 8 times a year here. Since there's a large military population in this town and people are constantly moving in and moving out, they're usually pretty successful. BD and I have sold in 2 and went shopping at 1. Today, I'm both volunteering (I get to be security! Where are my socks and flashlight?) and selling a few things that I realized I didn't need back in OfficeCleaningExpedition08.

Hopefully, someone wants some of my stuff. I don't plan to bring any of it home. It's great 'cause there's usually a donation truck at the end. Everybody wins!

Friday, December 5, 2008

Thank you, MSN Random Photo of the Day. Without you, I may have missed out on knowing that today is the Annual Day of the Ninja. I wanted to be a ninja once. As a matter of fact, sometimes I still act like I am one.

November 10, 2005

I vividly remember this night. BD and I were dating. It was a Thursday night, but the next day was a holiday. He had plans, I did not.

So I decided to surf the 'net. You know how I do.

I found a web site. And then the following happened, which I documented on Kodak Gallery. I have repeated it all here in its entirety, changing nothing, and obviously have no shame:

Watch what happens when "someone" has too much time on their hands and unlimited access to the internet... (http://www.rit.edu/~djl5698/ninja1.htm)

Aha! I did it. I am a NINJA!

The ninja sizes up the competition....

The ninja is angry and ready to strike. Beware of Angry Ninja!

Are you still here? I didn't scare you off, did I?

Why BD continued to date me after I sent him that photo album, I'll likely never know for sure.

The original web site that I used to make my ninja mask is no more, but I did find it saved elsewhere. Obviously, I'm not the only one who found that info essential to retain.

I hate mandatory fun. We're already having a "holiday luncheon" (that we have to pay for). I said I would go. Isn't that enough?

Anyway, I don't bake really. As a matter of fact, I keep typing it "back" so you can see that I have trouble even writing the word. Plus, yes, my back still hurts so it could be a Freudian slip.

There are rules: The cookies are supposed to be homemade and I need 2 dozen.

Do you know of an easy, tasty recipe I could use? If so, please share. They all think I hate the holidays (unfair statement but I'm tired of trying to explain it to them) so I would love to knock their socks off with some fabulous cookies just because.

Thursday, December 4, 2008

This hat, along with one for another little sweetie we know, arrived today courtesy of Jen. I think it's adorable. And since it's always somewhere on the spectrum of cold here, it will get lots of use.

Yeah, so I threw the phone. It's not a great phone to begin with, so I almost stopped myself. But not quite.

It hit the wall. Or maybe the DVD rack. I don't even care.

I didn't break it. I wanted to though.

That's how angry I was.

Why do certain people who are booking medical appointments have to take it personally and get defensive because the following are already taking place on the dates they offered you:

1. An Ortho appointment 2 hours away2. My husband is taking finals and can't come 2. We're going to be out of the country

Did she honestly think I was booking an EEG for my child because it sounded like a fun way to spend a morning? And that I was saying those dates weren't good because I enjoyed making her job more difficult than having her pick the date/time, followed by me saying "ok, sure"?

This whole EEG thing sounds like the opposite of fun, actually. I took Playette to the Endocrinologist today and she wouldn't even let anyone touch her. Period. Not for weigh, length, a brief exam, nothing. So an EEG? Eh.

Plus, we are supposed to make her stay up late and wake up early, followed by no sleeping during the 30 minute ride to the office. So it's going to take both of The Big Ones then.

Tuesday, December 2, 2008

I knew I wanted to do something to spruce up the place, but I knew no way in the world of how to do it. I checked out the free sites, but, yeah, I was totally intimidated and scared I'd lose everything. Then what would I read when I run out of internet? I tend to do that every so often so then I just start reading stuff I wrote myself.

What?

Anyway.

So, I *heart* Facebook. We all know that. And this nice lady befriended me. (If you haven't already, you should too.) And, as I am wont to do, I read her page and looked at all of the lovely photos. If you didn't think I did that to you, dear reader and Facebook friend, you are mistaken. I already told you that I read the entire internet!

So, yeah, I saw that photo of you in the bikini on the back of a motorcycle. You know who you are.

Back to the story...on this lady's page, she happened to mention some blogs that she's designed. I quickly noticed that I knew of her work (of course I did, it's on the internet) and was impressed. Would she work on mine? She would. WOOHOO!

So here we are. Made over.

Blog Guide to Style

What Not to Blog

How Do I Blog?

Project Blogway!

You know what makes it even more super-impressive? Behold pretty much the only guidance she was given since I am creativity-deficient:

I love Playette's room so I thought continuing the theme might work.

If you'd like the same for your own blog, feel free to contact me and I'll pass along Rebecca's info. I happen to think it's well worth the nominal fee.

And if you like the quote on the wall, that's "Anonymous Mindy's" (hee!) handiwork. I don't know if she's still in the vinyl letter business or not, but I'd be happy to check if you're interested.

The good news is that John C. McGinley will be on there and apparently one of "the doctors" is Dr. Jim Sears, son of parenting gurus William Sears, MD (also appearing), and Martha Sears, RN, and sibling to Stephen Sears who just happens to have 47 chromosomes.

I'm thinking hoping that their presence will prevent the episode from being fraught with misinformation and stereotypes. Also, I hear it's generally a decent show.

Monday, December 1, 2008

Hi, my name's Malea. Or Playette. My parents call me a bunch of different things. It's confusing, but I pretty much ignore them whenever I feel like it anyway, no matter what name they use.

Anyway, here's me on Thanksgiving morning. I like to climb and pull up on things. I may know how to cruise, but I'm not really letting anyone in on that secret just yet.

Check out my cute calfs though. I'm pretty strong.

Hey! Here I am from the front. Stop sneaking up on me like that, ok? Thanks.

.........

Insert really long nap here.

.........

Ok, I'm back! Everyone else was done eating, but that was all part of my master plan. Now I can eat all I want with no guilt! I like to eat. I get that from my mama.

Check me out using my fork. I didn't say I was using it correctly, but, hey, it was only my first day. Yesterday I was all, "What's a fork?" I'm interested in feeding myself so Mama's excited. I'm showing more of my desire to be independent every day.

Maybe if The Mama wasn't so busy taking pictures, she would've been a little quicker with the whole "feeding me greens" action. Sigh. Do I have to do everything myself around here?

Seriously? Do you want me to take pictures of you eating? I think not.